The answer: FFI , unlike many other fatal genetic conditions, doesn't appear until the victim is middle-aged, and tests to see whether parents carry the FFI mutation only recently became available (1).
Here the first questions of the I-function, and the first paradoxes of the disease, appear.
The effects of prions on the brains of FFI victims, however, are well-documented.
If this disease occurred in childhood, natural selection would have long ago done away with it.
Because it does not strike until middle age, however, parents who may be carriers must make difficult decisions about childbirth.
I tried everything from Ambien, to Tamazapem and Amitriptyline.
The medicines sometimes work, however, always on my back of my mind; I knew these medicines were only temporarily helping me.
Pierluigi Gambetti, one of the discoverers of the condition known as fatal familial insomnia (FFI), claims that it is "the worst disease you can get." (5) Given the vast number of diseases in the world, Gambetti's claim seems farfetched at first glance, maybe even selfish; who wouldn't want to take credit for discovering one of the worst diseases in the world?
But a quick overview of the disease presents solid evidence in favor of the claim- and some interesting insights about the many tasks of the I-function.
Paradoxically, it is in the parents' best interest to have more children, in order to ensure that at least some live FFI free into old age.
More children, however, also means more potential FFI cases- a tough paradox for the I-function to work through. FFI baffled investigators for years, because certain symptoms resemble encephalitis, end-stage alcoholism, and dementia, among other conditions (1).
I went into panic mode, racing heart rate, racing thoughts, restless leg syndrome, always worried that sleep would never come.
I went to see many doctors time after time, and went to the ER only to be sent back with Xanax and a large bill.
One can see from FFI victims that the parts of the I-function that have to do with language use and comprehension, with naming people and objects in the world, probably aren't located in the thalamus. “Hope” is the thing with feathers—Emily Dickinson Hope is the thing with feathers That perches in the soul, And sings the tune without the words, And never stops at all, And sweetest in the gale is heard; And sore must be the storm That could abash the little bird That kept so many warm.